On 7 March 2015, a four-year-old Italian girl dubbed “Clara” by the media (real name hidden to protect her privacy) died from subacute sclerosing panencephalitis (SSPE), a complication of measles, after prolonged suffering (the girl was in the hospital in which she died for over 4 months, and has been sick at least since last October, and hospitalized elsewhere).

Paying the price of anti-vaccine misinformation

Her parents accused her doctors of causing her death by failing to properly diagnose her illness early enough and provide proper treatment. The parents of the child are both doctors, the father and the grandson of the physiatrist Vincenzo Saraceni, Professor of Medicine at the University La Sapienza of Rome. They said the child would still be alive if she received proper pharmacological treatment. Their personal lawyer filed a complaint with the public prosecutor. But the doctors, in response, pointed out that the child contracted measles because her parents failed to vaccinate her – and then went on to develop SSPE, a generally fatal complication of measles. SSPE has become more common as measles rates increase.

The public prosecutor, Mr. Attilio Pisani, has ordered an autopsy and the acquisition of the medical records from the two hospitals where she was treated (see here, here and here).

So, what do we have here?

At this point, no charges for manslaughter were filed against anyone. What we have is the start of an inquiry into the girl’s death, following a complaint by her parents. We do not know who, if anyone, will be charged with anything in connection to this.

A pediatrician who regularly denies that he is anti-vaccine, though his claims suggest otherwise, Dr. Bob Sears, responded to the claim that measles is deadly by saying: “Not in the U.S., or any other developed country with a well-nourished population. The risk of fatality here isn’t zero, but it’s as close to zero as you can get without actually being zero. It’s 1 in many thousands.” He described encephalitis as “ extremely rare in well-nourished people.”

The downplaying of the disease’s risks is part of the case built against vaccination by anti-vaccine activists, doctors, and organizations. The other part is overstating the risks of MMR and attributing to it risks it does not have, like autism. As a result, parents don’t use the safe effective vaccine available – and little Clara, for one, paid the price of this misinformation.

Again: Clara – daughter of wealthy, well-educated parents, no doubt well nourished – died after months-long deterioration from a complication of measles. While no vaccine is 100% effective, MMR is very effective. If vaccinated, chances are she never would have gotten the disease in the first place. If misinformation about measles and MMR was not promoted by anti-vaccine groups, chances are her parents would have vaccinated her.

It’s understandable that distressed parents seek someone to blame, in this case by pointing the finger at the doctors. And the blame should be placed, first and foremost, elsewhere – but not on the doctors: on the providers of misinformation that misleads parents into this bad choice.

Will there be any charges? Frankly, I don’t think there should be. Even if the doctors could have diagnosed SSPE earlier, SSPE is generally fatal. And although the initial decision not to vaccinate was the parents’, I don’t think criminal penalties are the right way to deal with this type of error, given the large amount of misinformation out there.

If any good is to come out of this story, it is for other parents to realize that the risk from preventable diseases is real and they can protect their children from it. If the inquiry raises awareness enough to make that happen, Clara’s tragic, untimely, preventable death may save other children.

She, however, will never reach five, never play or smile again.

Notes

This article was originally published in March 2015. It has been updated to fix some copyedit and formatting issues along with repairing numerous broken links.

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This article is by Dorit Rubinstein Reiss, Professor of Law at the University of California Hastings College of the Law (San Francisco, CA), is a frequent contributor to this and many other blogs, providing in-depth, and intellectually stimulating, articles about vaccines, medical issues, social policy and the law.

Professor Reiss writes extensively in law journals about the social and legal policies of vaccination. Additionally, Reiss is also member of the Parent Advisory Board of Voices for Vaccines, a parent-led organization that supports and advocates for on-time vaccination and the reduction of vaccine-preventable disease.